Refreshed top 10 research priorities for CF revealed

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Today the top 10 refreshed priorities for cystic fibrosis research were announced. Chosen by the CF community in a project that began in January this year, these results will help set the direction for future CF research.

We want to ensure the research we fund is relevant to people with CF and those that support them. To do this we have been asking you to share your research priorities for CF research in a project called QuestionCF. Alongside the CF community, we have been working with researchers at the University of Nottingham, and the James Lind Alliance (JLA) team at the National Institute of Health and Care Research. The aim of this project was to refresh the CF research priorities identified in 2017.

The refreshed top 10 CF research priorities have been agreed as follows:

1. What options are available for those not able to take current CFTR modulators (including rarer mutations, not eligible and unable to tolerate)?

2. What is the best way to diagnose lung infection when there is no sputum eg children and those on modulators?

3. How can we relieve gastro-intestinal symptoms, such as stomach pain, bloating and nausea?*

4. How do we manage an ageing population with CF?

5. Is there a way of reducing the negative effects of antibiotics eg resistance risk and adverse symptoms in people with CF?*

6. What are the long-term effects of medications (including CFTR modulators) in CF?

7. What are the effects of modulators on systems outside the lungs such as pancreatic function, liver disease, gastrointestinal, bone density etc?

8. What are the effective ways of simplifying the treatment burden of people with CF?*

9. Can genetic therapies (such as gene editing, stem cell and mRNA technology) be used as a treatment for CF?

10. Is there a way of preventing CF related diabetes (CFRD) in people with CF*

*These research priorities were in the research priorities identified in 2017.

Thank you

We have been delighted with the response from the CF community to QuestionCF. A big and heartfelt thank you to everyone who shared their views.

people holding signs with the refreshed research priorities


There is so much more research to be done to ensure everyone with CF can live a life unlimited by their condition. I’m excited to have a refreshed list of CF research priorities, to guide it. It has been a privilege and an honour to be part of this project, thank you to everyone who shared their views and experiences with us. We look forward to working with the CF community to act on these priorities.

Dr Lucy Allen, Director of Research and Healthcare Data at the Trust

The questions in this refreshed top 10 are a distillate of all of the questions we received throughout this project. What the CF community have told us will make an enormous difference to future research. It is exciting and energizing to have a refreshed list.

Professor Alan Smyth, Professor of Child Health at University of Nottingham, member of QuestionCF management committee

The JLA was thrilled to support the CF priorities refresh.. Throughout this project, the engagement and commitment of the CF community has been inspiring, and has underlined the immense importance of this work. I hope that funders will respond to this emphatic call to action.

Katherine Cowan, Senior Adviser to the James Lind Alliance and member of the QuestionCF management committee

You can find out more about how the refreshed top 10 CF research priorities were agreed, and what this means for future CF research in our Frequently Asked Questions page.

More information can also be found on the QuestionCF project website, and the CF research priority refresh page of the James Lind Alliance website.

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